justine1
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Posts posted by justine1
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Totally agree with Raydon here, in my experience of working at the ASD social groups those who have self diagnosed are just as valuable as those who have a formal diagnosis. Also if any of them were pretending to be autistic apart from being really twisted and horrible people they would be outed and chucked out the group. Out of the members that have attended i have made exceptions for those with NVLD because it is similar to autism and those who are ADHD again for the same reason.
This is a support forum and claiming that self diagnosed folk are likely to lie is plain insulting. i have seen little evidence that parents feel they are autistic and others try and talk them out of that viewpoint. In fact i feel parents of autistics are more likely to be ASDers themselves rather than less. Has someone attempted to deny your self identifying as autistic Justine1? Did you experience difficulties with getting your children diagnosed? Oh and i had an autistic malice of a father so know full well that autistic bullies do exist.
i dont understand the difference between a parent coming on here and expressing they think their kiddo is autistic and an adult coming on here and expressing they identify as autistic? I EXIST campaign was about reminding the government and general public that autism does exist in adulthood. i was one of the speakers at the Bristol launch and from that campaign came about the autism strategy and autism act. This is what we should be doing rather than questioning each others diagnoses working together to build a better life for autistics.
My mum is an undiagnosed autistic she is in denial but the teacher relatives, me (with my autism degree) and many others know she is on the spectrum by her behaviour. When i can make allowances for her autism we get on great, when i cant or others cant/wont there are problems. Recently i had to ring the local eye hospital as she has a detached retina shes going in this week. Some of the parents at the NAS parents group claim im not a carer which i find plain insulting. i care for both my mum and my gran, i even have to do parent type things with my brother such as helping him with his university application.
I am sorry but I really don't know what "undiagnosed autistic" means? You can be undiagnosed but suspect you have autism or you can be autistic...but how can someone be an undiagnosed autistic?
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Nobody has made the point that self-diagnosis for adults shouldn't be necessary. It should be possible to obtain a diagnosis in the way one would with other mental and physical illnesses but it's all a question of cost - not just the cost to the NHS of obtaining a dx but the amount of financial and other support that might then be expected to follow a positive diagnosis.
It seems crazy to me that parents of a child with autism aren't automatically tested, not just for their benefit but to give researchers more information about the way it occurs in families.
I personally don't agree with self-diagnosis; it's much too easy to be subjective when filling in a questionnaire. Joining a forum to ask questions and learn is one thing but to give opinions and advice when you don 't even know if you have the syndrome is another.
Exactly my thoughts indiscreet.
I have not said people should not question whether they may have ASD or not(again people really should read every comment!) Of course before my son was dx'd it was suggested that he has ASD by a GP,that was not a dx but I joined this forum anyway to learn more as I knew nothing about it. I did not ONCE comment as a parent of an ASD child,merely stating this is what was suggested to me,until after he was formally dx'd which was almost 4 months after I joined. Oh and no I did'nt have difficulties in getting either of my sons' a dx.
An example of my point is if I were to put a post on here asking for advice about one of my sons' people will comment with "when I was that age..." (or similar) so if you have a dx then fine your point is valid but if you do not how would I know if its relevant? how do I know you are not NT? I am not saying don't post I am saying that one could state "I don't have ASD but...." then its not giving a false assumption that you do have ASD. I do the same with my 4 year old,he has no dx but I often see certain things he does that other kids with asd do. So if someone comments I may say "my NT son does that,though he may have ASD..." or similar. So people can take my comment with a pinch of salt.
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Asperger's is not a mental condition or a mental disorder.
I agree.
I do have mixed feelings,as I believe its not just the case of removing Aspergers its about lumping everyone with ASD together.In a way this could be positive for those on the higher end of the spectrum having the same access to services those on the other end have but how would those on the lower end feel being treated the same as those who they may view as being better off.
When Sam was dx'd in 2009 his official dx was ASD,I don't know whether they knew about this change approaching or not but the paediatrician told me that by putting Aspergers he would not be able to get the right help(especially at school) she also said she could'nt be 100% certain he does have aspergers but he does meet the criteria for an ASD dx. The same happened almost a year later with Dan though they said to me he is most likely to be HFA and it says that alongside his ASD dx.
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I understand how you feel the same happened to Dan about a year ago(age 5) I now fund it myself. Irony is Sam gets 1:1 and group sessions twice a week at his ASD unit yet he does not have a delay!
I would have thought they would have waited until he is more settled in school and ask the school what they think about discharging him. I guess some services are up until school age he will then have to access it through school. Have they given you advice on what to do at home? And if he does regress can you get referred back to them again?
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I think this is an interesting question, I've blamed my parents on here before at times, more so last year than this.
When I was 19 I decided to build bridges with them, its taken a very very long time and a lot of effort - at that time AS wasn't anything we'd heard of, and so I was angry at them for not noticing my depression, self-harm or declining mental health.... Later, when I was diagnosed with AS (without seeking a diagnosis) I felt angry again, I felt as though here was some sort of confirmation that they really didn't have a clue. The thing is, in many ways my parents do not have a clue - but - they are my parents and not everyone else's, I don't think all parents are like mine, I don't think every person is the same either.
I've spent many many years trying to understand, forgive and accept my parents and I'm not fully there yet, I'm a lot closer than before - for one key reason - many years ago I started to understand they are people too, they made mistakes, they have their flaws, they aren't perfect, but slowly, slowly I find that I feel a little easier about them in some ways - certainly more so than how I felt 5, 10 or 15 years ago. But then I'm stubborn and I refused to just walk away, my relationship with my parents is not perfect, but its sort of ok, its a work in progress in some ways, but in others it is good enough as some sort of relationship exists.
As for adults feeling hard done by, I can only speak for myself and I don't think we need the sob story lol. The funny thing is that nothing has changed, I could write the sob story and it all happened to me, all of it, and a lot of the time nobody helped - but I needed to go through that, I needed to be in the position I am today where I could start to look and take responsibility, find some degree of self-awareness, reflection, consideration, understanding of myself and the world. In some ways I've barely started, but it is this change in mindset and the beginnings of these things that are changing how I perceive things out there in the world.
I think its all very well for people to stand and shout "help me" but I do also think that we all have to take responsibility, and in the past I did notice that people are a lot more inclined to help, when you show you are willing to help yourself too.
And I suspect that when people get angry, bitter, resentful, it is often easier to divert blame onto someone else Justine, and parents are an easy target!
Best
Darkshine
Thank you Darkshine
Enjoyed reading your post. -
Is this not wishing something on someone? Uncomfortable
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I was born into a generation where communication meant talking in sentances and so I have tried my best to communicate in that way ever since. I never text as I always feel I am not giving my best response, rightly or wrongly. Because I respect the other person I feel I should always try my best if that makes sense without writting an essay on it, lol!
My dad prefers to talk on the phone or face to face but....he always phones at the wrong moment and I cannot get him off the phone he can talk for up to 1.5hours! About nothing really.
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Justine I agree many adults do feel hard done by because they are of a generation where they have missed out on support in their own minds. Personally I really don't feel hard done by rather the opposite. My childhood was in some ways brutal in that there was no understanding and it was a case of sink or swim and I just dug in and fought like hell to be the person I am today. In many ways I dread to think what would have happened to me in the current system. I would I suspect be a guinea pig for adults to push around searching for reasons as to why they didn't have to work with me because looking back I was pretty difficult and a bit of an handfull.
Looking back does us few favours though, there is a retrospective culture around at the moment. In contemporary terms I was asaulted as a kid by a number of adults, but in a rough working class gritty Northern town at the bottom of the educational ladder what the hell do people expect to have happened.As a kid you just took it and moved on. In a similar way my parents knew nothing about autism why should they. I was born in very difficult circumstances and when I left hospital living conditions were not ideal, but my mum took me to a few clinics as you did every now and again up to a point and then you hit the school system, it was how things were. I can't blame my parents or anyone else for what it was like, nor as Robert says do I expect anything now. It would be nice if my parents understood and read up on the condition but they don't so what can I do but accept that is what they are like.
What I do expect though and it is not asking much and it is what this post is about is a little bit of recognition and respect. I think when people get that they are able to move on in their lives far easier. I don't think the initial reaction of adults either formally diagnosed with AS or self diagnosed is to expect loads of things to be there for them. I think a lot of their reaction is simply wanting a little bit of recognition that they have symptoms and difficulties in their lives which may or may not be related to autism so they can move on. When that recognition doesn't come from the autistic community be it other people with the condition, parents , national charities, GP's and other professionals I believe it is at that point they start to get angry and at times stuck in their own lives. If there was a national register and all it allowed people to do diagnosed or self diagnosed was put a dot onto a map where they live many would feel a lot better about themselves, they would feel I am not the only one rather I am a single dot in a big picture of dots. But as far as I am aware no one does that. And the question is if they did how long would it be before some sections are asking for dots of different colours or sizes because that is what this forum feels like at times. It feels as if people are saying my dot is in fact a circle and it is different. Or we might want triangles decause I have a diagnosis of clinical depression and OCD and it goes on and on, because someone is then a star or a something really complex. When I think the reality is very simple people just want to feel they are not the only one feeling as they do and others feel the same way.
Thanks Lancslad that makes alot of sense.
As for the other comments let me put it to you like this: You all know me as a mum of two boys with ASD and so when having a discussion you will talk to me as such. If I were to suddenly say "I may have autism" what would you then think? I know the answer but I am sure you will not answer truthfully. I know the answer because I have seen on this forum that when a parent does mention this possibility everyone either goes quiet or tries to persuade them otherwise. Maybe the newer members are different but thats my own observation. Hence why I believe self dx'ing can cause problems. Again though I can say that I do not know anyone from this forum and as such have no evidence that any of you have a dx yet I DO LISTEN (actually read but hey who cares) TO EVERYONE ON HERE. So that answers the OP's question,please read all my posts before judging as I did say how important adult posts are in my very first post!
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I absolutely do not mean to have a go at you Justine. It's just now been 2 years since my son was diagnosed and not much less time than that since all my own puzzle pieces fell into place. For me that is. Not for the professionals who are meant to 'know' what constitutes ASD and what does not. The OT I worked with last year was moved sideways in her job because the psychiatrist she was under did not like her working with people who had (diagnosed) AS as he felt that the diagnosis was invalid. She informed me that everything I said to her and even the way I spoke was indicative of all the people she had previously worked with who had AS. She asked me to provide my opinion on a piece of research she was conducting into how to write questionnaires regarding anxiety measurement in people with AS. I was very happy to do this because I (and she) was certain I had something to contribute as I have had anxiety difficulties, traceable back to the age of 5 or 6.
Her psychiatrist boss is very highly respected in his field of expertise. But, can I respect this doctor? No, I cannot. He, for me represents the very worst of the medical profession with his arrogance and narrow mindedness. He also lied about me to another professional.
Doctors are not infallible - as my mum would put it, they have 'feet of clay'. This doctor and many like him are up to their necks in clay.
I really do get what you mean and for you(as a mum of a child with ASD) the case may be different. If you take a glance at the "welcome" discussion board you will notice an overwhelming number of paople who are self dx'ing. I just don't think its right. Whilst ASD is a condition and cannot be compared to an illness,I do feel you can compare it to depression. I so often hear people saying "I am depressed" that is how they feel state of min,in the same way as ASD,but how do they know they are truelly depressed. Not all doctors get it right but at least in your case you have tried what gets me is those who accept they have ASD but have never consulted any professional about it.
Don't give up if its what you want,if you happy within youself then you may wish to leave things how they are.
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Going back to the OP. I have noticed over the three years I been on here that many adults do feel hard done by and many feel their parnets are to blame some don't even see their parents. Again I am curious to know why this is?
If I found out at this age that I do have ASD I would not blame my parents for not seeing it sooner or for the way they pushed me to do well etc. There is that "they don't get me" attitude but again don't we all feel this way at some point in our lives.
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I suppose it depends, to some extent on how well-informed the person is. For example, my sister is a medical student and she hurt her ankle. She was able to self-diagnose her injury accurately based on the knowledge that she most certainly already has. She is not qualified to make such a diagnosis per se, but there is no reason to doubt her conviction, because she has an in depth knowledge of the presentations of her injury, having only recently studied that area of anatomy in her medical degree.
Many parents read vast quantities of information regarding ASDs in relation to their children, and have an intimate knowledge of how these present in their children, and where there is a genetic inheritance of certain traits. For some of these, geographical location may ever bar them from diagnosis; but I personally would accept the opinion of a parent who concluded that they, too, have AS, because their intimate day-to-day acquaintance with AS may well put them at an advantage over professionals whose overview is broader but shallower. If the pattern is so strong and compelling that it's impossible to ignore, then what makes it any less AS than diagnosed AS?
I agree with you. My only problem with it is that we do become so wraped up with everything ASD related when we have kids with ASD,sometimes we walk the shops and spot someone and think "they may have ASD" or even just watching telly. So we may see similarities in the way our kids behave and how we do(or did) however NT parents do the same,they are our offspring of course there will be similarities.
I can quite easily tick almost every box for ASD criteria but I don't think I do have ASD,but my perception could be wrong and I could get a dx,whereas someone in the same position may think they do have ASD but actually they don't. Hope that makes sense.
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I think we have to be careful and apreciate the reality of getting a diagnosis as an adult. I recieved a formal diagnosis after I was told by an undertrained and misplaced mental health professional "that I was far too intelligent to have AS". I wrote to their director of mental health who then offered to pay for a formal diagnostic process to take place.
For a lot of adults there simply are not the resources, expertise or experience in their own areas to get a diagnosis. Before I recieved mine I was more than happy to be self diagnosed for the simple reason 'I am the expert in my own life'. I am the person who has lived it and believe me there is not a lot of positiove stuff if anything which comes with self diagnosing. I made that decision after talking with a number of people, reading up on a lot of research and a lot of books on the subject, and most importantly reviewing my own life. In reality I went into about ten times the depth that the formal diagnosis process did.
In my opinion if someone has done the same as I did and is well informed and self diagnoses then I am happy to listen to anything they might have to say I would never say i am in a better position because some professional has wrote a few words regarding thier opinion.
So I can see exactly what Lyndalou is saying here. Many adults such as myself with a diagnosis feel somewhat ignored and rejected by sections of the broader autistic community at the end of the way I can at least wave a piece of paper in their direction, for many others they can not and it must be so much more difficult.
A few months back I had to go for an MRI scan on a couple of prolapsed discs in my lower spine. As part of the process they discovered higher up a large tumour growing on my spine, that I hadn't a clue about because it has caused no real symptoms yet, but it is there. In so many ways I wish I didn't know about it, because there is nothing I can do. Nor are the NHS in a position to do anything about because I don't tick and boxes, and so I know it is there and have to get on with life. In some ways not having a diagnosis is very similar in my experience you know you are carrying something around it is as clear as day as the tummour was on the scan but what do you do about it, you just have to get on with life. If someone said to me I am sure you haven't go a tummour I would find that very hard to deal with, because I know I have. In a similar way i couldn't say to anyone you might not be on the spectrum because how am I to know?
But could you not say that for everyone? Where do you draw the line? The online information and the online tests are sometimes mis-leading and a case of ticking boxes,whilst its similar to being formally diagnosed,the formal process takes many things into account and not just one person's opinion of how they see themeselves.
I completely understand the lack of services out there for adults and that some people will never know,but I just don't think you can claim to have ASD if indeed you may not. It goes both ways really. I am always listen/read people's opinions but if you don't have a diagnosis you can have an opinion without stating you do have ASD.
If someone claimed to have cancer without a diagnosis we would be horrified but when its ASD or even mental illness such as depression(which many people self dx) we not too bothered but why is that?
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Why you angry at me though? I am merely stating my opinion and I don't think someone who has no formal dx can give an opinion on how it was growing up with ASD when it is hypothetical. I am not saying those who believe they have ASD don't I am saying how can you be 100% certain of that and give advice. If it were me I would'nt feel comfortable. I may comment on here about my own childhood experiences but I almost always say "though I don't have ASD" yet I may very well have,however as there is no evidence I would rather say I don't than I do.
As I say its my own opinion.
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But its a visual timetable,therefore you will be using pictures and words not just words. A two year old can have such a timetable,they may not be able to follow it but you teach them and thats the purpose. Otherwise how will you know when he is ready? And when he is how will you suddenly get him to understand. It takes times so you start from now,otherwise he will be 8 and you will be in the same place you're at now.
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I could never think that ASD does not excist in adults that would be rather stupid as it is a lifelong condition and my boys will one day be adults with ASD,what I don't believe in is self diagnosis and so if someone on here is giving advice from an ASD point of view when they only have a self dx I really would not pay much attention to that person.
Thanks for that Justine. Makes me feel even better today
and that's really quite sh1t!What part of my comment? Cannot see where I have insulted anyone? If you self dx for any condition and try and give advice on that condition it can lead to problems but thats just my opinion.
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Its the 20th anniversary of texting so I was just curious from and ASD point of view how has texting helped you? Or has it had the opposite effect and you have become less social? The same applies to those with dyslexia has it made it worse because of all the texting abbreviations?
My boys are only 9 and 6 so have no experience of the benefits(if there are any) of texting,but I do know for my 9year old typing has helped with his story telling as opposed to writing.
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Lancslad and indiscreet you make some good points. I think some(not all) adults have struggled/muddled through the "NT" world and somehow think because of that they are "owed" something and so expect everyone to adjust to them rather than the other way....the irony of that is from previous comments I see that adults think this of children(which can be true) I think this is partly "I did'nt have the opportunities you have" attitude.
I could never think that ASD does not excist in adults that would be rather stupid as it is a lifelong condition and my boys will one day be adults with ASD,what I don't believe in is self diagnosis and so if someone on here is giving advice from an ASD point of view when they only have a self dx I really would not pay much attention to that person.
I really think the group would be boring and dull without the point of view of the adults with ASD. Occassionally I have seen some adults post in the education discussions and it means alot to hear their side or experiences,I wish they(you) would post more. I don't have to agree with what has been said but its great to read posts.
Forgot to add on the subject of being selective,I do not think this is exclusive to parents I have seen many adults picking which posts they want to hear rather than getting a balanced view. I come on here to get a balanced view and I enjoy discussions where there is a bit of a debate because that is the point,again it would be very boring if every parent or every adult was to agree with each other and again we are all so different.
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That depends on how consistent you will be. You will need to explain to him that you will remove the toy/s and for how long. Realistically he should not be having toys in bed if he is having trouble sleeping,if it is that much of a comfort to have them he would not have been so willing to give them to you and when you took one away he would have been upset,which clearly he was'nt and therefore he does not need them.
However it can work if you remove the toy immediatley after he has done something wrong,if he has five cars you need to remove all five at once he can then earm them back over the course of the day or the next day. The first car he can have back after 30min if he is behaving then continue giving back each car gradually. If he misbehaves again remove how ever many cars he has. He will eventually understand,these things don't happen overnight.
As I say I been using sanctions correctly for two years,I had the "I am not bothered" attitude on more than one occassion,once Sam was not allowed to play outside(during summer) which is something he loves, he really did'nt seem upset but I did see him gazing out the window and when I told him he could go out the next day for behaving he was so happy. You just need to be consistent some days they may not care about being "punnished" other times they will cry, kick and scream.
If he has a visual timetable this should include telly time even if he does not have a favourite programme I am sure he does watch something,if its on the timetable you can then remove the time. Or it could be time doing something else he likes,so long as it is on the timetable. The timetable and sanctions need to work hand in hand as with the reward system.
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Rewards and sanctions need to go hand in hand. You can't have one without the other. Whilst rewards are great they are really ineffective because the child only gets the reward when they behave which could be weeks even months...what about when they are not so good? Not getting the reward does'nt work there needs to be a consequence for the behaviour.
Treats or stickers cannot work on a day to day basis. Removal of time is very effective having used it for two years I can see a big difference in the behaviour of all four boys. So if he has playtime or golden time at school he needs to lose that when he misbehaves and at home he should not be able to play what he wants or lose telly or game time. At his age 10min should be ok as a starting point. So he loses 10min for negative and gains 10min for the positive.
Stickers can be used if he does not lose any time in a day and then at the end of the week or even month he can have something special for the good behaviour. It does not have to be 100% maybe 75-80% I would just let my boys chose something from the pound shop,its cheap and I avoid using food/sweets as a treat/reward.
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Telling off on its own won't work. What sanctions do you have in place and does he know what will happen when he does something wrong?
Likewise with school?
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I think everyone's behaviour changes through the day or week to week. People can wake up happy and end miserable or vice versa. Usually as a result of what the person's feeling as well as external factors.
My boys have had periods of regression but its usually over a much longer period..so they may have been ok in one area (sleeping) for 6months but not so great in another (speech) but then it changes to the other way around. It can be so hard as you end up at square one all over again. Again there is almost always a reason for the change in behaviour. It may seem insignificant to you or I but very much so for them.
It may be a change at school as they are starting to implement changes to help him at school and this subtle changes can easily effect him home and school. I know with Sam he takes at least 2-3 weeks to settle when the school changes something and that includes when coming back from a school half term or holiday. It can be annoying as he will settle for four weeks and then they on a break again and it starts all over again. Are the school using a visual timetable for him and are the sticking to it? Sam had one at his previous mainstream but it was not in a place that was accessible for Sam and so was quite useless really.
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From my own point of view I think its very individual condition no two ASD people are the same,on top of that(no offense to the adults with ASD) you all grew up in a different era...whilst things are still a struggle it has definatley improved over the years. So for those reasons I dont always "listen" to the adults with ASD.
However there have been posts where I think that the adults have made a very valid contribution and I enjoy reading their experiences. It is reassuring to hear others have been through the same. Though I cannot always relate to techniques used or some of the views and opinions....but thats the same as with other parents on here.
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Hi
I wondered if there is a link between ASD and poor dental care (bad teeth or gums)
All four of my boys have some degree of trouble with their teeth,I don't and neither does their father so I believe it could be the "mixture" of the genes,prehaps the same that has caused two of my boys to have ASD.
Josh(NT) has overcrowding,his teeth and gums are healthy but due to the overcrowding will need braces next year.
Sam(ASD) has terrible hygiene,he will not allow me to brush his teeth and has not done so for about two years,his teeth look very crooked,but have not been referred to orthodontist as they feel they are doing fine.
Dan(ASD) has healthy straight teeth but his gums are quite weak and pale. He lived with his father for awhile after we separated so I know its not from the care I was giving him as his teeth and gums have not changed.
Eli(NT) has just had four teeth extracted at age 4 this has never happened to anyone in my family and none of his brothers. I am very good at brushing and flossing his teeth morning and night and yes he eats sweets,but just once a week on a friday night. Which only started at 2.5 years old.
All the boys have healthy diet in general,limited but healthy. I know of one or two people who have a child with ASD,that child has "good" teeth but their NT child has had many problems, this is definatley true in my case.So I wondered if their problems are related to the same mixture of genes that cause ASD.
Upset by lady in cafe
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I agree with the above.Do these alert cards work with children? Just curious as I personaly would'nt think so. In other posts I have explained that with my two boys I do not make excuses or allowances for behaviour,after all I have two NT son's who I tell off for negative behaviour why would I let the two with ASD run riot? How does a parent know where the ASD/ADHD or any other condition plays a part in the behaviour and where its just a case of being naughty(as it could be combination of both)? That is why I think by having cards or saying my kid has ASD or is disabled we are just making allowances. I chose to just ignore the funny looks and comments,in fact after 7 years I hardly notice anymore,nobody has ever said anything directly to me about my boys so until they do I will continue to focus my energy on teaching them how to behave and spend less energy on other people.